Second Stakeholder Forum with ELSI Experts and Patient Representatives to Develop the Health Research and Innovation Cloud Strategic Agenda

Date: December 9, 2022
Location: Amsterdam

Date: January 24th, 2023

Location: Online

On January 24th, 2023, EATRIS-ERIC hosted a virtual workshop to bring together experts in ethical, legal and societal issues (ELSI) to discuss the potential services that could be provided by the Health Research and Innovation Cloud (HRIC). This event represented the second stakeholder workshop held to discuss the development of the HRIC Strategic Agenda, and focused specifically on engaging patient representatives, ethics committees, and legal experts. Attendees were well positioned to discuss the ELSI challenges faced by the community and how the services from the proposed HRIC could help address them.

The objectives of the workshop included reviewing the draft strategic agenda, gathering input on proposed services from ELSI experts and patient/citizen representatives, and defining the timeline and actors to ensure that feedback would be reflected in the strategic agenda of the HRIC.

The workshop began with an introduction by Gary Saunders from EATRIS and a presentation of the Strategic Agenda by Christian Ohmann from ECRIN, followed by a group discussion. Additionally, there were break-out sessions on the HRIC proposed services moderated by the HealthyCloud WP8 partners.

Gary Saunders from EATRIS emphasized the importance of engaging with the ELSI community to ensure that there is sufficient public trust in the systems driving Europe’s personalized medicine agenda. Overall, the workshop provided a valuable opportunity to work towards building this trust and to ensure that the HRIC Strategic Agenda is informed by input from ELSI experts and patient representatives.